From the day we arrive on the planet
And blinking, step into the sun
There’s more to see than can ever be seen
More to do than can ever be done
There’s far too much to take in here
More to find than can ever be found
But the sun rolling high
Through the sapphire sky
Keeps great and small on the endless round
It’s the Circle of Life
And it moves us all
Through despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the Circle
The Circle of Life
The Circle of Life (Elton John, Tim Rice)
I’ve lost track of which plan or what night we’re on but that’s actually a good thing. We had a long conversation with our wonderful neurologist and decided to adjust the dose and timing of Nik’s Neurontin. Apparently, he metabolizes the liquid formulation pretty quickly; by the time the first half-life has been reached, he begins to get actual withdrawal symptoms which may trigger partial seizures —or just look like it. Um, yeah, about that…
We’re queuing up for a twenty-four hour EEG to rule out actual seizure activity. Heck, why not? It’s been a year since his last seizure —as far as we know. We do know with a reasonable degree of certainty that the nocturnal pains and waking were not caused by seizure activity; he was having the “episodes” during his last EEG in March of 2008 —the one that showed no signs of actual seizure activity.
We also know this: since we tweaked Nik’s meds on Friday, Nik has been sleeping straight through the night with little sign of distress or discomfort. (I hope I didn’t just jinx it by putting that in writing!) I am getting closer to actually sleeping longer myself. It’s amazing what a good night’s sleep can do for a body, isn’t it?
If I ever get caught up, I’ll let you know what it’s done for me. Meanwhile, here’s what it’s done for Nik:
The day I posted the cute story about taking away Nik’s shoes to keep him from climbing the gate? By 11:00 a.m. the same day, he figured out how to climb anyway. That was Thursday. I spent the rest of the afternoon trapped again.
That night, we fortified the castle reinforced the gate. My family room now looks like Baby Gitmo a really secure place for Nik to play.
Friday, Nik ate broccoli! He just reached over and picked up a small floret from my plate. Crunch! He bit the little green fluffy bits right off. He actually even swallowed it down with the help of some water! I love that Nik will try any food at least once and enjoys fruits and vegetables! Whew!
Saturday, we went to Sesame Place for the Variety Club Day for Families with Autism. It was our first time at Sesame Place so we weren’t sure what to expect —especially from Nik. It was also our first outing as a Family with Autism and, again, we weren’t sure what to expect. Both of those merit their own blog posts though I may not get to it for a while. I can tell you that we met some really wonderful families, had a great time and can’t wait to go again. To whet your appetite, here’s a glimpse of the day:
Saturday night, I learned that a very dear and special childhood friend passed away. I’ve been riding a roller coaster of emotions; we were extremely close growing up though we’d lost touch when I left town many, many years ago. He was like the brother I always wanted when we were kids. We reconnected via Facebook recently; I was so excited at the prospect of seeing him over the summer and getting to meet his wife and daughters, having him meet Nik and Niksdad and reconnecting. One of my greatest regrets is that I’ve waited so long to start to reconnect with old childhood friends.
Nik seems to sense that I’ve been sad. I don’t think it’s a conscious knowing, more of a kind of symbiosis; he’s been gentle and loving with me, going so far as to actually want to snuggle in my lap before bed for the past two nights. Maybe it’s the medication or maybe it’s symbiosis; I can’t know for certain, but it feels indescribably, achingly lovely.
I can count on one hand the number of times in our life together that Nik has let me rock him to sleep in my arms —let alone upon his request. Yet, Saturday night found us plastered together in the heat of his room, rocking in the darkness until he fell asleep. I could smell the baby soft scent of sunscreen in his hair and taste the tang of sweat on his skin when I kissed his brow. Pure heaven.
Both yesterday and today, Nik ate. No, really —everything! He.had.no.formula! The only things that went through his feeding tube were water and his vitamin. We’re working on getting him to increase his fluid intake by mouth; it’s slowly coming along. Once we can get him drinking enough fluid by mouth we can start to think about getting rid of the feeding tube. If you had told me less than a year ago that we would be in this place I wouldn’t have believed it. I always knew we’d get here but I just assumed it would be in slower, smaller steps.
Today, he not only signed Mama several times with prompting, but he also signed it when I asked “What’s my name?” It makes my heart sing.
Oh, and did I mention that he tried to change his own poopy diaper the other day? Yeah, that was a fun time! Or did I tell you how he’s trying to feed himself with a spoon now and signing to indicate “I’ll do it myself!” more often now? Or how he’s helping to pick up his toys when I ask him to? Seriously.
It just seems that Nik is making huge leaps forward in multiple areas lately. Climbing gates, eating food, signing new words, using intentional communication with other people besides just me… it all seems so sudden. Sometimes I actually wish it would slow down —just a teensy bit— so I can savor the moment at my own pace.
Nik, clearly, has other plans.
Today’s accomplishment involved opening the child-proofed door to the powder room and playing in the toilet and the sink —five minutes before we were supposed to go to his PT and OT sessions across town. Niksdad has been busy installing new hardware and extra gates in between studying for his final exams! Nik, like his daddy, is highly mechanically inclined. I fear it is only a matter of time before he figures out how to work around all our carefully laid plans.
I can’t wait to see what our little MacGyver does next.